Wednesday, September 7, 2011

The definition of a HERO.

I have to introduce you to someone. 

But first, I want to start by giving you a brief summary of 
"a day in Tripp's life."  
Tripp doesn't know a day without pain.  He wakes up in pain, he goes to bed in pain.  He starts the day with a painful diaper change, while he cries so hard that he struggles to breathe and has to be suctioned usually more than once during one diaper change.  
He then goes straight into the rocking chair into our arms (with us knowing that we better not even stop to grab something off of the table or we are getting "fussed").  
He rocks the entire day, with maybe a few minutes of playtime here or there a couple of times a day (if we are lucky).  He has lost his eyesight due to blisters that have formed and scarred over his eyeballs. 
 He never gets to do the things that normal children can do because he can't speak, see, walk, or even go outside. 
He has to have a bath and dressing change every other day that causes him extreme pain and anxiety.  He knows this is coming and usually dreads it for half of the day worrying about when we are going to pick him up and undress him.  
If it's humid outside, his trach is usually better, but we do a lot of suctioning.  If its dry out, his trach stays dry and he has trouble breathing even with his humidifier on. 
He eats by me shoving food into his stomach with a tube.  He wants to eat by mouth, and will try occasionally, but usually takes one bite and decides that it hurts so much that he doesn't want another.  
He has over 20 teeth that he's had for over 2 years that have never once been brushed.  
He has sores all over his entire mouth and tongue from his teeth rubbing (just like if his skin is rubbed).  
OH, and his body is covered in raw, deep wounds that never heal and he has to stay wrapped in thick bandages every second of the day, with pounds of Aquaphor underneath those "already suffocating" dressings.  


It's one thing to have this happen to your child without you choosing or knowing it.  
For me, of course, there was no other option than to devote my entire life to my baby- just like most mother's that I know would do.  


What if you knew all of these things that I just mentioned to you, and yet you STILL CHOSE to step up to the plate and devote your life to a child with this disease (who is not even your own flesh and blood)?  Now THAT to me, my friends, would be the definition of a HERO. 

Meet my Hero, Caroline:

Caroline is 20 years old... Yes, only 20 years old...
And she has volunteered with babies and children in Russia, South Africa, Swaziland, Lesotho, Romania, Thailand, and China since 2008.  She spent the last year volunteering in China and Romania, as well as advocating for waiting children in China, and children in need of medical visas around the world.  

Currently, she is fostering a beautiful little boy named Raul, who also has EB.

Meet Raul:

Caroline tells his story on her blog: "Raul was born in Barlad, Romania, on October 19th 2009. He was born with Epidermolysis Bullosa, as was his sister who passed away at one month old.  He lived in the hospital for four months, when he was then trasfered to Tutova Clinic. I met Raul the day he arrived in Tutova, and immediately fell in love. At the time he was in very poor condition, and his condition was not widely known in the area. I was in contact with doctors in the United States during my time in Romania to help find ways to improve his quality of life. Once home I began working on getting Raul a medical visa to come to the U.S. for a short time to receive more expansive testing and wound care. Finally in early August I got the email I was waiting for, and Raul was accepted to Massachusetts General Hospital and Colorado Children's Hospital for free medical care!"

Caroline is taking care of this beautiful little boy mostly by herself and with the help of her courageous and supportive parents.  She is devoting her life to keeping him alive and getting him the best care possible.  She is by his side every minute of the day, never leaving the hospital... not because she HAS to, but because she WANTS to.  Caroline is from Massachusetts, but her and Raul are currently in Denver, Colorado, where Raul is receiving free medical care.  
Last week, he had a feeding tube placed because he was unable to eat without being in pain and without his mouth bleeding.  
He is also receiving IV antibiotics for an infection that was in his bloodstream.  

And just like every other EB child that I "know," he seems like he has the best disposition.  Smiling, playful, and happy.  

How unfair and cruel is this disease?  

Raul's sweet little hand...

I would love to be able to say (before Tripp was born) that I would have fostered and cared for an EB child (or any special needs child) just because it was the "right" thing to do.  But I can honestly say that I think I was way too selfish.  Thank God that there are people in this world who put their own selfish needs and wants aside and CHOOSE to cater to the needs of the less fortunate.
Because it's one thing to devote your life to YOUR child, but it's just downright admirable to devote your life to a child who is not your own.  

So, please, take a minute and hop over to Caroline's blog
and show her some support. 
And please keep her and Raul in your prayers.  
She's is giving a VOICE to one more child who isn't able to have a voice of his own. 
Much, much respect and love to you, Caroline. 


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